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Author
Topic: AIDS dementia, anyone else as scared of it as I am (Read 10605 times)

So I have noticed my memory isn't what it used to be. I thought that's just me getting older.Well now I'm thinking it isn't. I started losing some short-term memory in the last year, and now find myself losing long-term memory as well. I have always been a pretty good speller and now find myself forgetting the most simple of words.I also find its very frightening to forget things mid sentence while talking to people. I'm wondering if anyone else is dealing with this, and what can we do about it.

JoeJoe, I go through the same things with memory, word spelling, even forgetting how to get to a store I always shop at. I just do the best I can, and try to let the rest go. Sometimes I worry, sometimes not. Most times not, at least not right now. Just do what you can, and give yourself a break.

Edited to correct a mis-spelling.

« Last Edit: December 16, 2009, 08:05:24 PM by BT65 »

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I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

I watched my great grandmother die from Alzheimer's and it wasn't pretty. I can't imagine after everything I have gone threw, that I would forget myself to death. That sounds like a very horrible way to die. I'm not cared of death at all, but am terrified of dying as badly as some of my friends did. Thank you so much for responding. You are the first so I guess not a lot of others have this fear like I do.

So I have noticed my memory isn't what it used to be. I thought that's just me getting older.Well now I'm thinking it isn't. I started losing some short-term memory in the last year, and now find myself losing long-term memory as well. I have always been a pretty good speller and now find myself forgetting the most simple of words.I also find its very frightening to forget things mid sentence while talking to people. I'm wondering if anyone else is dealing with this, and what can we do about it.

JoeJoe

Joe,

Same here also. And it is scary. And it's not just memory lapse, but also concentration and focusing issues. I've noticed more and more, when I am having conversations with others, that I completely go blank, for a few ( very long seconds) until I can remember what the hell we were talking about. I've noticed it more, (even though its very minimal ) over the past few years. I'm 58 by the way.

I am worried about this,especially, in the workplace. While I know my job very well, there are times when I catch myself messing up at work.( and it's usually over simple things). I now have a list that I go through each morning, before I leave work, to recheck , and make sure, there were no mistakes made.

JoeJoe, I am completely terrified off recognising the patterns off loss and deterioration detailed here . From the many stays in Hospital and witnessing the effects on loved ones and the person in Hospital , speaking about it all terrifying. If I ever do become afraid or a loved one points something out I have vowed to my self to get to my hiv Doc pronto. This is such a hard subject to stay with and talk about but in a way thats why I am trying to write this reply I understand as the human lives longer the greater the chance off brain problems and people with hiv are living longer, so yes i am afraid I hope you find way your through this , keep us posted, michael/theyer ps I also think that talking about the scary things make them a bit less scary, so thanks for keeping the situation on the LTS FORUM.

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"If we can find the money to kill people, we can find the money to help people ." Tony Benn

Its nice to know that I'm not alone in the dark anymore. This aspect of this disease scares me the most because it takes a fundamental part of who we are and that's our memory's. It feels like I'm losing myself and its really happening to me. Sorry, just a little emotional lately.

Hi joejoe . Just wanted to welcome you here ... I forgot to do it earlier LOL .

I sometime get so caught up worrying about my health that I forget that I'm OK today . I try to live in the moment and take it day by day now . I have been poz so long I have lost my perspective on how I should or would feel sometimes .

I can tell this issue has you worrying . Please for your self remember that after 23 years you are still going strong and have allot of living to do .

Mark, thank you so much for the link. My family and healthy friends have been telling me I'm being irrational and thinking there is something wrong when there isn't. Now I now and can show them this article. This problem really started to get very bad for me after I was in the hospital last year for viral meningitis. Knowing what it is helps a little, talking about it helps way more thank you so much.

Thanks to JG1962 as well, for the words of encouragement, I am most appreciative.

I've had brain fog for years and one thing I found, that really helps is the drug Methylphenidate, also known as Ridlin. I take heavy doses of depression meds and my biggest complaint has always been, that I feel like I am always in a fog. Some of it is a result of the meds, but it's no way to live your life. Forgetting is hard enough, without being in a perpetual fog. The Ridlin, actually increases my ability to focus. I don't get any kind of speed high from it, rather I gain clarity and the ability to really concentrate. I take a slow release in the morning, with two regular doses, through the day.

I can honest say that this drug has greatly improved my life. Maybe it, or something similar, may help you.

So I have noticed my memory isn't what it used to be. I thought that's just me getting older.Well now I'm thinking it isn't. I started losing some short-term memory in the last year, and now find myself losing long-term memory as well. I have always been a pretty good speller and now find myself forgetting the most simple of words.I also find its very frightening to forget things mid sentence while talking to people. I'm wondering if anyone else is dealing with this, and what can we do about it.

JoeJoe

This happens to me everyday , so no it's not just you, sometimes I can't find ANYTHING, like car keys, my wallet, I even forget my meds, until my partner Bob reminds me, other things like spelling, speaking, and writing, I'd like to post more on this forum, but, sometimes, I'm just unable to do so, due to not being able to remember real simple things JOE, it's kinda frighting when you think about it, so, I just try and do the best that I can do, and HOPE, I can remember to do the things to keep me alive I'm not really sure if I can do anything about this, but, for now, I've learned to live with this......

« Last Edit: December 17, 2009, 02:02:02 PM by denb45 »

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"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Thanks for the info Killfoile. Unfortunately as an ex dope user(clean 4 years) Ridlin does give me a high.I take wellbutrin for depression myself and have not noticed any side affects from it. It has basically evened my emotions out.Have you tried it? I love the no side affect part of it.

Dennis, unfortunately there is no current treatment for this.Just our luck, another untreatable side affect. Write things down, set alarms, post notes around your home.This is what I do to remember to take my meds. Do whatever you have to do to stay on point with your meds, drug resistance is no fun. Best wishes for you and your partner.

I have to say that the only time I've had bad brain fog and concentration problems was when I was on anti-depressants. I ditched them all years ago and my mind is a much better functioning entity. The price I pay is that I do still have depressive bouts but I'm better at managing them than back then. Not saying this is the solution for those of you that find better benefits with anti-depressants of course, but that's just what my experience was. Benzos do it to me too, but I've not quite kicked those out of the house completely yet. Almost there though.

Of course, there are plenty of HIVers that aren't on anti-depressants and have brain fog issues and I do think there's much to learn about long term inflammatory responses with HIV as that goes.

I totally understand what you are dealing with. I started having the same problems about 5 years ago. When I first tried learning more about this issue it was hard to find much direction or understanding.

Today the good news is, there is allot more information available, read everything! Many studies are revealing findings everyday and comfirming that these issues do exist, but on many different levels. I have been involved in one of the NIH studies learning about this matter for the last 4 years. The only down side is that research is confirming the problem, but not ready to give us a "unified" answer on how to treat it.

So it really falls back on the individual at this time in medical history to figure out what exactly is happening to them. Don't think it is "Dementia", unless it has been confirm to be by a Neurologist. There are many levels of brain related issues out there and many different causes. Dementia is only one and honestly it's the extreme of what could be happening. You could have a "Mild Neurocognitive Impairment" that may never advance into Dementia. So take a deep breath my friend.

Everyone is scared of the word Dementia, even people outside of the HIV world. So try to step back alittle and think this through be fore just assuming this to be Dementia. Do some testing and it will ease your mind. Trust me on this. Can I could recommend to you not to use the word Dementia? Refere to what your experiencing as a "Neurocognitive problem", because it could be many things.

If you really want to understand what could be happening to you, search out a doctor that can really help, a Neuropsychiatist. They can arrange for a Neuropsychologist to conduct a full battery of Neuropsychological Tests. Kind of like kids games. These tests will determine exactly what is happening with your General Memory, Learning Skills, Executive Functions etc......Only after this type of testing can you clearly understand what YOU are dealing with. Honestly you might be supprised at the results...........could be getting older still, maybe stress related or even sleep related.........

I take Methylphnidate also, it does help me. You can have it prescribed a few different ways; different dosages & time releases. These can make a big difference on how it effects you - so don't write it off just yet, it may still be an option for you. Make sure your working with a doctor who understands "Neurocognitive" issues and how to prescribe these types of medications for that purpose. I've learned the hard way - not all doctors understand this issue!

Be strong, remember to breath and give yourself a break, but be determine dude!Savor the moments, one day at a time!Happy Holidays my friend, Scott

Thank you so much Scott and I will definitely bring it up with my doctor. I am mostly scared of the rapid progression of it, just in the last year. My family and friends have started noticing it a lot and they rarely notice anything about my health. Leaves me always wondering what's next.

Memory loss and distraction/loss of concentration can be caused by other problems, one of which is depression. Have you looked into other possibilities such as that? Dealing with HIV can be very difficult especially in the first few months/years and depression is not unusual in people still sorting out all the fears and feelings of powerlessness, loss of self-worth, feeling like a pariah, et cetera. It can also be self-perpetuating because anxiety adds to the problem.

After I tested positive in late 1989 I went through a long period of general mental distraction along with the rest of the baggage but over time it improved. I still misplace my keys, cell phone, wallet, and 2 nights ago somehow lost my glasses without which I can't see 3 feet. I'm still looking for them (and re-looking, going through every trash can in the house, checking the refrigerator bins, the washing machine, and sundry other unlikely places) but I can usually tally a column of numbers twice and feel secure the total is right. At one time it took 4 or 5 tries.

Losing my mind is one of the most frightening possibilities to me but a few people, friends and not-such-friends, have been rude enough to suggest it's already happened...

Good luck!

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String up every aristocrat!Out with the priests and let them live on their fat!

Whats next? Handsome, I do ask myself that question all the time, I keep coming up with the same answer..........one step at a time, stay relaxed and keep learning how to give yourself a break. Understand what is really happening today, before you fear what next. This stuff doesn't change over night. Have you had a MRI & spinal tap? Also think about looking into Depression, Anxiety and Sleep disorders......just to name a few.

I think that's the hardest part of experiencing this issue, learning to give yourself a break! So much easier said then done, isn't it?

"Rapid Progression" concerns? Start by nailing down what actually is happening to you. Have an MRI. The testing will help the most. We used the test results to structure some cognitive rehabilitation & exercises for the specific issues found in testing. Honestly between these mind exercises and the ritalin I understood my challenges better, found improvement. Maybe not total improvement, but enough to keep me motivated and focused! It really helped me relax with my issues the best I can. I have my moments, i"m human, but they are understood better!

I have to say that the only time I've had bad brain fog and concentration problems was when I was on anti-depressants. I ditched them all years ago and my mind is a much better functioning entity. The price I pay is that I do still have depressive bouts but I'm better at managing them than back then. Not saying this is the solution for those of you that find better benefits with anti-depressants of course, but that's just what my experience was. Benzos do it to me too, but I've not quite kicked those out of the house completely yet. Almost there though.

Of course, there are plenty of HIVers that aren't on anti-depressants and have brain fog issues and I do think there's much to learn about long term inflammatory responses with HIV as that goes.

Yep, I still grab for the benzo, when the walls start closing in on me, and sometimes they do

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"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

I'd like to post more on this forum, but, sometimes, I'm just unable to do so, due to not being able to remember real simple things

I know exactly what you mean. There are times, when I am typing out a response, And I look back at what I wrote and say to myself " What the hell did I just write." It seems that either my brain is moving too fast for my fingers, or my fingers are moving too fast for my brain !

A lot of time I am all over the place and I just hit the back button, and say the hell with it, and decide to try it another day, and have better luck. and Heaven forbid, if I don't use the spell check !!

It drives me nuts, because I know what I want to say, but getting it out there is another thing altogether.

When I found this site I was totally embarrassed to post anything . I would sit and stare at the screen not seeing any mistakes until I come back later and see what I wrote . I'm mostly over that now and hope folks see it for what it is ... a 47 year old man who has been poz for over half his life with brain fog and the desire to share my thoughts with others .

I know exactly what you mean. There are times, when I am typing out a response, And I look back at what I wrote and say to myself " What the hell did I just write." It seems that either my brain is moving too fast for my fingers, or my fingers are moving too fast for my brain !

A lot of time I am all over the place and I just hit the back button, and say the hell with it, and decide to try it another day, and have better luck. and Heaven forbid, if I don't use the spell check !!

It drives me nuts, because I know what I want to say, but getting it out there is another thing altogether.

Ray

Yes Ray, I know what you mean, I used to be VERY GOOD, at report writing, I had to write-up everything I did on a Police Report, after every arrest, to make the case stick for court, so, i had to be good at this, so that the attorneys could read it and prosecute them in court, now it's dam-right embarrassing, not being able to put things into words, and the way I feel, about what i want to say it's a little scary when I think too much about all of this

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"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

To Boo Radley -After so many years having this I have come to not only except my situation, but even learned to embrace it. I have suffered my share of depression and feel as I have conquered its daily effects on me. Not to say I don't have my moments still. As for losing things, I don't really lose anything(everything has it's place), it's more losing my memory's and things I learned in school as a kid. I also can get confused and lose focus easily at times. That's the scary part. Thanks for your words of encouragement. It means a lot.

Scott- Unfortunately I have suffered a Hate Crime that resulted in me having a jaw full of metal, so no MRI's. Just my luck, thanks for the suggestion tho.

Ray- Amen on the spell check its my best friend...LOL

Jg1962- I'm sure others on here overlook such small mistakes we tend to make. As J.R.E. said that's what forums are for.

wow that was exhausting, I had to write it all down first to remember what to say to each of you.

I try to exercise my brain a little each day with a little Jeopardy! (sometimes I'm surprised but what I remember ) and some reading. Although right now I'm reading the official biography of The Queen Mother and every other page has 2 or 3 footnotes and it's a little more than my brain can handle!!

My memory was never that great so I can't say I'm suffering from a BIG loss ... but I have REAL trouble concentrating. I'll be watching the weather or something and the next thing I know I've completely zoned out and have NO idea what was just said.

Since, I just finished watching a special on the making of Gone With The Wind I've decided not to think about this anymore today. I'll think about it tomorrow since after ...

AA

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It is not the arrival that matters. It is the journey along the way. -- Michel Montaigne

...To Boo Radley -After so many years having this I have come to not only except my situation, but even learned to embrace it. I have suffered my share of depression and feel as I have conquered its daily effects on me. Not to say I don't have my moments still. As for losing things, I don't really lose anything(everything has it's place), it's more losing my memory's and things I learned in school as a kid. I also can get confused and lose focus easily at times. That's the scary part. Thanks for your words of encouragement. It means a lot....JoeJoe

Oops! My bad... I leaped to the conclusion you are a "newbie" based on the number of posts you've made. What a dolt! Now all I can proffer is almost everyone's memory declines as we age. My spelling used to be excellent and now I find myself looking at familiar words as if they're in Klingon, and it's not just the polysyllabic verbiage I so delight in. A word like "heat" can make me pause several seconds to consider if it's two es or ea... Thank goodness firefox spellchecks as I type although it seems to favor "Briticisms" sometimes but not others ("favour" was underlined before I deleted the u...) -- or I really am losing it...

I've always had trouble focusing and, paradoxically, find that smoking pot helps me concentrate on more mundane tasks like constructing a spreadsheet or entering data into one. I volunteer for the Krewe of Barkus here in N.O. and manually charge several thousand credit card registrations and purchases every year and if I'm not stoned it takes forever. Put that in your pipe and smoke it, as they say... I also always end up counting the $15000+ in filthy, disgusting cash post-parade and the bank has never corrected a deposit... whoopee!

Like Andy and aztecan I try to exercise my mind a bit but other than solitaire Scrabble the only other game I like is Shisen Sho, which may not be much of a brain booster but passes the time.

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String up every aristocrat!Out with the priests and let them live on their fat!

Boo, I to have found that smoking pot does help with concentration and energy as well. I have found several games on the internet to exercise my brain and strange enough posting on here has helped as well. We can all admit just a little bit that this forum can be mentally challenging at times. Just following all the different threads and if your like me( I post a lot I guess) then it is definitely a workout for the mind.

I have had my share of memory lapse and being that I was an actor it has really taken it's toll on me. I would be on stage an sudenly go blank where I couldn't think of a thing,or improv, but I refuse to give in. Alot of folks in the acting community probably think I am crazy but since I was diagnosed I have very little to do anyways. I am forgetting the past but I thank God for those who took pictures while I tried to hide cause that brings alot back and talking over your past with whoever will listen will keep it closer in your thoughts. Keep reading whatever you can get your hands on cause I understnd that keeps the brain vital. My thoughts are with youan never think your alone cause as I have foun outit is just the lack of folks saying it out loud. Mark

Its because of responses like yours Mark that I now don't feel alone. I feel like I have a home in this forum and a new family that truly understands what we have to deal with.It has proven a most valuable asset in my life and it cuts the loneliness in half.

I was just reading a post in mental health and HIV and it has me so excited I don't know what to do. This guy had mentioned the memory loss,lack of concentration, reading difficulties and so forth and he mentioned HAND- HIV Associated Neurological disorder and he said how some drugs are better at getting to brain. Which I started on earlyon and then my levels went undetectable and T cells went above 400 but i was having crazy hallucinations so I switched. Since then I went to Atripla to reduce number of pills and they mentioned that it wasn't good at getting to the brain. He mentioned nevirapine which he says is the best at neurological HIV and he and improvements with concentration, poor attention, memory problems, reading difficulties, loss of train of thought low energy( which is me) I am over the moon excited to find out what doc thinks. It could help you also.

cause I am tired of the proof reading and going back to correct mistakes that I didn't make before

I too have heard about HAND, and have discussed it already with my doctor, unfortunately I am one of those who is always waiting for the next new drug, as my labs plateau with each one. I have became undetectable but cd4 remains under 300. I can't seem to get above that number. I also have had drug resistance to a number of the meds, so whole classes of medications are no longer available to me. Sustiva being at the top of that list. I thank you for the thought tho and am always willing to research or try anything new.